Monthly Archives: August 2015

A Note for New Rett Parents

These are my thoughts, others may have different opinions. You’ll find that a LOT! We don’t all agree, but that’s ok. So many families, religions, cultures etc. how could we? But for me this is what I would tell you. … Continue reading

Posted in Communication, cure, hope, Music, Rett Syndrome | Tagged , , , , , , | Leave a comment

Army of Us

Duncan Millar and James Westgate inspire so many people everyday. They’ll tell you it’s our girls and boys that are inspiring, but it’s a mutual thing. They ALWAYS find the exactly right words to make us parents and caregivers feel … Continue reading

Posted in Army of us, Rett Syndrome, Uncategorized | Tagged , | 1 Comment

The Next Steps Through the Desert

Wow. While time has been passing, Neuren has quietly, behind the scenes,  been taking step after step and gaining ground with Trofinetide. Check out their latest announcements… http://www.neurenpharma.com/IRM/ShowDownloadDoc.aspx?SiteId=386&AnnounceGuid=23a3caf0-969f-4269-824e-fe32548eefa9 http://www.neurenpharma.com/IRM/ShowDownloadDoc.aspx?SiteId=386&AnnounceGuid=89e7ec87-31e5-4aa3-b029-0b449df3189c So, to me it feels like we went from full stop … Continue reading

Posted in Congress, cure, Neuren Pharmaceuticals, Orpan Drug Status, Rett Research, Rett Syndrome, rettsyndrome.org, Trail to a Texas Trial, Trofinetide | Tagged , , , , , , | Leave a comment